Life With MS Can Have ‘Beautiful Limitations’

Please allow me to begin this post by saying that I find nothing about living with multiple sclerosis to be a “good thing”, a “blessing” in any way or something for which I am “thankful”. MS did not “give” me anything positive, I am not a “better person” because of this disease and I would give back and relearn every lesson I have gained ten times over if I could matriculate in another of life’s hard knocks courses.

I say those things – repeat them really, as I’ve said them over and over again – because what I’m about to write about might sound a little Pollyanna to those who do not know me as an MS Pragmatist (I don’t see the glass as half-empty or half-full; I just try to figure out how I can live on half a glass…)

In an interview I heard over the weekend, a young, Spanish jazz musician was talking about her use of the traditional gaita (pronounced “GY-tah”), a version of the bagpipe from her native region of Galicia, in her music.

Cristina Pato spoke of trying to record the famous Miles Davis contemplative and (I’ll attest to it as a former trumpet player) difficult composition, “Blue & Green”, using an instrument which just doesn’t have all of the notes Davis’ trumpet could produce.

Pato spoke of the “constant challenge I have with my instrument…” and BOY couldn’t I understand that. Not as a former hornsman, but rather as a person living with a disease that robs the control of my instrument… my body.

And then she said something which has had me going back to listen to the interview over and over again since Sunday morning.

She spoke of her “…passion about the instrument because it has so many (and this was the hook for me) beautiful limitations that really make you work harder to get things done”

That’s it in a nutshell for me; this living with MS thing.

My instrument – my body – has limitations now that it didn’t have before. These are not the simple limitations that age will place on a person; MS has nibbled, bit, stripped and ripped away many of the notes I once had in my scales (that this particular piece of music is a textbook example of Model Jazz – music made up of scale progressions rather than chords – also made this former musician with MS smile a little for the analogy). MS has not, however, taken away my desire to make life’s music.

That it is more difficult to do the things that were once easy (and still should be), or that I cannot do them at all but still try lends a kind of sweetness to those things still possible; especially to the tasks of life once executed without thought or effort but now require great concentration and even struggle. Succeed or fail at the tasks at hand, I revel in the trying and the sweetness of the limitations.

Maybe, particularly as it is Inauguration Day, you will allow me to quote Theodore Roosevelt (surely no Pollyanna) to close this blog;

“It is not the critic who counts, not the man who points out how the strong man stumbled, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena; whose face is marred by dust and sweat and blood; who strives valiantly, who errs and comes short again and again; who knows the great enthusiasms, the great devotions, and spends himself in a worthy cause; who, at the best, knows in the end the triumph of high achievement; and who at the worst, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who know neither victory nor defeat”

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ABOUT THE AUTHOR

Trevis Gleason

Trevis L. Gleason is a food journalist and published author, an award-winning chef and culinary instructor who has taught at institutions such as Cornell University, New England Culinary Institute and...read more